This sure wasn't in my plan, but it is my journey!
To follow my story be sure to go to my first post as I am attempting to write this blog chronologically. Blog Archives are on the lower right hand side of the blog.

Pages

Followers

Thursday, May 29, 2014

I have taken ten Levothyroxine (.05mg)
tablets and so far, and I am here to report that I am actually feeling better.
I have less fatigue, and wait for it……..less PAIN! I am actually still in a
disbelief mode and keep checking the pain level in my feet and hands. I have
not added the Gabapentin to the mix “yet”, as I like to be scientific and only
make one change at a time.

I think I am most grateful for the
relief in my hands at night. They still go numb and ache, but it is nothing
like it has been; I noticed this change three days after starting the
Levothyroxine. I thought it was a fluke but the degree of numbness and pain at
night, seems to be less; I am actually able to sleep.

The foot pain has also gone down a
notch or two; typically when we teach dance classes on Wednesday nights, I am
in complete agony by the third class; last night I was still able to
participate without limping. To say that I am thrilled beyond belief is an
understatement.

The other really great outcome has
been the lifting of the dark, gray cloud that made me feel so fatigued, that I
was unable to move far from my sofa. This past week I have been able to plant
flowers, start a knitting project and begin my painted markers for the garden,
in addition to my “typical” daily routine. I do not know who is happier about
this; me or my husband!

Of course at this moment, I am
going to attribute these small victories to the Levothyroxine, despite the voice
in the back of my head that keeps saying, “But what if this batch of Sprycel
isn’t working?” Although, the optimistic
side of my heart says, “But what if the Sprycel IS working, but this batch just isn’t causing all of the bad side
effects?” I have been on this new bottle of Sprycel for eight days.

I have been on an increased dose
of Sprycel for one month due to my increased PCR, and had a PCR drawn yesterday
to see if it is working. I will have a thyroid check in about a month. Keeping
my fingers crossed for good results on both fronts.

Friday, May 23, 2014

One of my favorite shows is the “Little
Couple”; it is a show about Bill and Jen Arnold and their two adopted children.
It is a story that brings awareness to dwarfism and what makes it so great is
that these people, although challenged in many ways, never stop reaching for
the stars. It is inspirational, fascinating and downright enjoyable.

Recently Jen Arnold was diagnosed
with a rare form of cancer; the show followed her treatment and documented her
recovery and eventual cure. The day she received thumbs up, an all-clear from
her oncologist, her oncologist and the staff that treated her brought her over
to “The Bell”; they told her that she had beat cancer and it was her turn to “Ring
the Bell”! At first she was a bit reluctant, but once she started ringing the
bell, you could visually see her face light up and her huge smile said it all;
I fought hard, and I won!

That moment was bittersweet for
me; I was so happy for her, but once again, it made me want to “ring the bell,”
something that keeps being brought to my attention. The other night my Bunco Babes
gathered for their monthly game night. This month it was at our house, so at
the end of the night, I was still around for gossip time. The new gossip was
that another neighbor was diagnosed with cancer; lung cancer. One of the gals
in the circle is currently being treated for breast cancer.

Being on the outside of that particular
circle, my attention was drawn to them when I heard the word “cancer.” I heard
the one gal saying that she had three more treatments and that the newly
diagnosed neighbor had a specific number of treatments planned. While I am
extremely happy for them, there was a small voice inside my head that said, “They
will get to ring the bell.”

Once again, I was reminded that
someday…….”I WANT to ring the bell!” I
know that this may seem silly to some, but after living with cancer for over
three years, sometimes I am just weary. I don't want to think about or feel
side effects, I don't want to have to see an oncologist every three months, I
don’t want to have to read about new complications and losing a member of our
ever increasing community, I don't want to have to worry about the new things
that creep up, due to a continual dose of highly potent medication, and I WANT
TO RING THE BELL!

I want to have the energy that I
used to have, I want to ditch the pain, I want the headaches to go away and I
want to be able to sleep the whole night through, without being woken up with
hands that are so numb that they ache incessantly. I want to be able to say
that I fought the fight, and I won! I want to win; I don't want to have to fight
every day; apparently I want a lot of things!

I am guessing that I must be in
some sort of a three year slump; because there are times that I almost forget that I even have CML. Most
of my days are good days; I have a happy life and I am so grateful to still be
here to enjoy it; I have it better than many and I sometimes I must remind
myself of that fact, but is it wrong to reach for the stars and shoot for the
moon?

Thursday, May 22, 2014

Since most of my life has been
blessed with extremely good health, I have never had a doctor to call my own.
On the rare occasions that I was a bit under the weather, I would simply go to
an Urgent Care Center and be on my way. Of course I always had a gynecologist,
and I had a great relationship with him, but I never found the need to have a
person that was responsible for my overall well-being.

It has been three years and three
months since my CML diagnosis and during that time, my oncologist has been my “go
to” guy. He has treated my bronchitis and managed my side effects; he has
looked over my overall health and is always available when I have a question or
concern, but I have come to the realization that his primary function is to
control my leukemia. This, coupled with the fact that he is 900 miles away, has
led me to finding a new “go to” doctor that close to home.

One of the many benefits to having
a doctor close to home is the convenience; no long road trip necessary! The
other benefit is that I am no longer in Los Angeles, the land of camping out
while waiting to see the doctor. The efficiency here in Boise is outstanding; I
did not wait to see my doctor and all of my tests were scheduled and run ON
TIME! I received my results promptly and my concerns have been quickly put to
rest.

My EKG was normal, I do not have
the final results on the echocardiogram yet, but the preliminary results look
good; I know that these test may not be “necessary” but with all of the new
information that is becoming available about long term TKI use, we thought that
an established baseline was an appropriate protocol, to monitor my continuing
health.

The only thing that was a bit out of line was my thyroid; it was in the
high “normal” range so we are treating that with .05 mg of Levothyroxine, with
a recheck in 4-6 weeks. I am hoping that this explains my extreme fatigue and
weight gain! Wouldn't that be something?

Apparently I am in the Hypothyroidism range; and I DO suffer from almost all of its' symptoms: hair loss, inability to think clearly, extreme fatigue, sensitivity to cold, dry skin, weight gain, puffiness, memory issues, joint and muscle pain, and high cholesterol what I find fascinating is that all of these symptoms are also symptoms for Sprycel. It certainly makes me wonder whether I am experiencing them because of my thyroid, because of the Sprycel, or am if I getting a double whammy, because they are caused by both? I suppose that time will tell, and of course, I am hoping and praying that the thyroid medication will bring me at least a small reprieve!

My wish list is less pain, softer skin, thicker hair, weight loss, as I would love to be able to go to my closet and "wear" the clothes hanging there, less puffiness, less pain and the biggie; lower cholesterol! Do you think that this is too much to ask for?

My new doctor also prescribed Estrace
Vaginal Crème to help with vaginal dryness from the TKI’s; it is to be used two
to three times a week, as needed. Next we tackled the nerve pain; we decided
that I would try a low dose of Gabapentin (100 mg), in an attempt to get it
under control. I have yet to try this new drug, but think I will be brave
enough to give it a shot soon because getting rid of the nerve pain would
improve my quality of life tremendously.

I will see her again in two weeks to go over
all of the testing, and to make any necessary adjustments to our plan of attack,
in combatting the TKI side effects; I have decided that having a go-to person not
only brings me peace of mind, but may also aid me in my quest to not only “live”
with CML, but to Live WELL, with CML.

Tuesday, May 20, 2014

Many people have the good fortune
of floating through life footloose and fancy free; I often marvel at this phenomenon
and wonder what living life in this manner would be like. As a person living
with CML I have come to realize that my journey will never be footloose, or
fancy free; granted, there will be times that I will be able to float along on
smooth waters, but other times I will sink; with any luck, for the better part
of the journey, I will just be able to bob along, on a slow and steady course.

This past week, those of us living
with Chronic Myelogenous Leukemia, have experienced a gambit of emotions. We
have been exposed to an advertising campaign that falsely claims that CML has
been cured and we have been enlightened to the realization that an extremely
dangerous, although rare condition, known as Leukemic Meningitis, is a possible
complication of CML; for many of us this came as a shock.

Of course, because I am not a
stick my head in the sand type person, my mind has been reeling; I am not
certain which topic is more disturbing to me, although the “CML has been Cured”
probably wins because this campaign was created; it was in someone’s control,
someone made the decision to publicly air this campaign, despite the fact that
all of us that are cured of CML, have
the potential to develop Leukemic Meningitis, not to mention live with all of
the other side effects, that affect us daily.

While claiming that CML has been
cured put many of us into a rage, the realization of Leukemic Meningitis made
many of us fearful; this is understandable. We are a very small group of human
beings that share a rare disease; because of the internet we are able to
connect. We are able to share our hopes and dreams, our fears and our
frustrations.

We are able to offer support and
share information. Often we have good news to share, but other times our news
is difficult. We lose someone in our community, someone’s disease has
accelerated or stopped responding to treatment, or a life threatening
complication has developed. All of these things are a reality and I believe
that it is normal for them to cause us to visit our own mortality.

When a very small community is
faced with two major incidences in a short period of time, it is “normal” to
feel confused, frightened and angry. It is ok to reach out to each other with
our fears and concerns, and to look to each other for support and comfort, but
what we all must remember is that each and every case is different.

Because of the internet we are
able to stay connected; we are privy to information that many years ago would
have been nearly impossible to get our hands on. Both of these things make us stronger;
they give us the opportunity to become an educated and informed patient. The
internet allows us to be a part of each other’s journey and gives us strength
in numbers.

I hope that we will all continue
to band together, and turn the turmoil of the past few weeks into power; power
that will enable us to become more educated, more informed and better equipped
to fight CML. By sticking together and continuing to voice our opinions, we can
help shape the foundation of living with CML, for all of those that will
continue to be diagnosed with this disease, in the days to come.

Because of the birth of TKI’s, our
community will continue to grow, new information will continue to be discovered
and we are all here to witness, and shape the world’s view of chronic
myelogenous leukemia.

Friday, May 16, 2014

For those of you that know me, you
know that I am a stickler when it comes to my health, and the health of others.
You know that I insist upon finding the correct fit when searching for a
physician, and that I strongly believe in self education and advocacy.

I believe that the doctor/patient
relationship is just that; a relationship. I believe that it is in the best
interest of both parties to listen to each other, evaluate the situation and to
then make medical decisions accordingly.

This being said, I cannot believe
that I “hit the jackpot” on my first try; I have found an internal medicine
physician that I LOVE: shocking but true. I can count on one hand, probably two
fingers, how many times that this has happened. I am still in utter and
complete awe, as is my husband. He has NEVER heard my sing a doctor’s praises;
especially right out of the gate.

What makes this internal medicine
physician so awesome is her knowledge, her demeanor, her compassion, her willingness to listen
and her responses. She was the most thorough
physician that I have ever had the pleasure to meet, and get this; her office
staff was awesome, too! Friendly, competent and on time!

I do not think that I have ever “seen”
my doctor, at my scheduled appointment time; I always go to my doctor appointments
fully prepared: something to eat and drink, a knitting project, a book and my
iPad to play games; prepared for the long haul. Typically I have time to finish
up my project, read my book and play a few games before I am ever called back
to the second waiting area.

Yesterday, I barely sat down; they called my
name, took my vitals and put me in an examination room. I never even had the
time to open my book; within seconds, the doctor appeared. She introduced
herself and asked how she could help; an hour and a half later, I left her
office completely satisfied, and grateful to have found a doctor that I can
relate to; for once, I felt as though every aspect of my health had been
addressed and thoroughly evaluated.

I told her about CML, the side
effects and my growing concerns over long term drug use for CML. We decided
that monitoring and treating current side effects would help with my daily life
and that baselines for everything else would be a good idea. She ran blood
work, including thyroid, ordered a chest x-ray for any fluid around my heart or
lungs, did an EKG and ordered an echocardiogram. I will meet her again in two
weeks to devise a medical health plan.

It has only been a day and she has
already called with results from the tests that have been performed; I did not
have to call and nag the office, even once; shocking. The other tests have been
scheduled and my prescriptions are available for pick-up.

Thursday, May 15, 2014

With the exception of having had
ovarian tumors and currently living with chronic myelogenous leukemia; I am an
extremely healthy person. I just do not get sick. I have had two bladder
infections in my life, both treated at an urgent care center or emergency room.
I do suffer from an obligatory case of bronchitis on a yearly basis; usually in
October, which has been typically been treated by either my oncologist or my gynecological
oncologist; I have never had a “doctor,” by this I mean a general physician,
family doctor; on that people go to whenever they are sick with the “usual”
stuff; sore throat ear ache, fever, flu, nausea, etc.

Since I live in Boise, Idaho and
my oncologist is in Los Angeles, California and I am living with a chronic
cancer that seems to have ever increasing side effects from my treatment, I
have decided that I should put my big girl panties on and form a relationship
with a local physician; just in case.

Now, shopping for a physician is
not something I enjoy; as a matter of fact, I actually hate it! I am extremely
particular when it comes to my health and my expectations of the person that I
entrust my life to, are extremely high; not many that I have met fit the bill
and searching to find the right fit is often like finding the needle, in the
haystack.

So, where does one begin? For me,
I usually seek out the advice of another physician, or a nurse. Nurses in
particular know “how” doctors treat their patients; doctors know “who” to trust
with their life. Once I have done some homework, I make some calls; I talk to
the office staff. Evaluating the office staff is really important as these are the people that you will deal with,
prior to getting to your physician; they make your appointments, often assess
your “need” and also schedule follow up visits and tests that are ordered; you
may also be at their mercy when it comes to receiving the results of ordered
tests. You had better like the office staff!

Next comes the really crucial part
of forming a long term relationship; the physician. How does he/she make you
feel? Does he/she ask questions and
listen to your answers? Does he/she appear to take an honest interest in
you and your health? Do you
communicate well with each other? Do you feel rushed or unimportant? Does
he/she seem knowledgeable? And most importantly,
would you trust this person with your life, and would you feel comfortable
knowing that this person had your life in their hands? There are many things
that come into play when choosing a physician and these are just some of the
guidelines that I use.

I also decided that I would choose
an Internal Medicine Physician as opposed to a Family Practitioner as an
internist deals with the prevention, diagnosis and treatment of adult diseases. ACP;
American College of Physicians offers this information:

Caring for the Whole Patient

Internists are equipped to deal
with whatever problem a patient brings -- no matter how common or rare, or how
simple or complex. They are specially trained to solve puzzling diagnostic
problems and can handle severe chronic illnesses and situations where several
different illnesses may strike at the same time. They also bring to patients an
understanding of wellness (disease prevention and the promotion of health),
women's health, substance abuse, mental health, as well as effective treatment
of common problems of the eyes, ears, skin, nervous system and reproductive
organs.

Caring for You for Life

In today's complex medical
environment, internists take pride in caring for their patients for life -- in
the office or clinic, during hospitalization and intensive care, and in nursing
homes. When other medical specialists, such as surgeons or obstetricians, are
involved, they coordinate their patient's care and manage difficult medical
problems associated with that care.

You can also go one step further
and check their credentials; many places also have a rating system available
online.

Friday, May 9, 2014

Shortly after OHSU Knight Cancer
Institute debuted their new advertising campaign ONEDOWN, stating that
CML was Cured, those of us living with CML began such a ruckus that OHSU revised their advertising campaign's wording
from "Cured" to "R.I.P. CML" to “Lethal Becomes Nonlethal," in
an attempt to find the correct words to fuel their campaign, without offending those of us, currently living with CML.I am still, however, perturbed by the whole "ONEDOWN" wording campaign.

They also issued an apology. I
truly believe that this faux pas was likely devised by an advertising company,
in an attempt to utilize the success of Gleevec, which does manage CML and give
us all a new lease in life, to raise money in order to do the same for other
cancers; I do not believe that it was ever intended to disrespect or make light of those of us living with CML.

As a person living with CML for three-
plus years, I am truly grateful and ever indebted to the research that OHSU Knight
Cancer Center has done, developing the drug that will hopefully allow me to
live long enough, to actually see a “cure” for CML; to someday allow me to ring
the bell.

I believe that the view of a
person living with CML and the view of researchers and oncologists differ
greatly. I also believe that in a perfect world, we would all walk in each
other’s’ shoes. I understand that in order to continue to search for “cures,”
money needs to be raised; and what greater way to raise money than to share
stories of success. I applaud OHSU’s
dedication and efforts in forging forward in their attempt to eradicate
cancers, one by one.

I am not certain that “Lethal
Becomes Nonlethal” is the appropriate slogan for what they are attempting to
portray, but it is definitely better than “CML Cured”. I almost think that “R.I.P.
CML” is more appropriate since that really IS what Gleevec does; it stops CML from
multiplying to the point of causing death. We all actually still “have” CML,
and our TKI’s are managing it. We all hope and pray that every PCR test we
take will show that our BCR-Abl is under control and is continuing to“Rest in Peace."

Food for thought:

In my opinion, a
focus group that works closely with an advertising company, when dealing with
sensitive subject matter, can save all persons involved, a whole lot of
heartache and a whole lot of money!

Contact info: Michele Tschirhart at
Meeeesh51@gmail.com

I humbly accept this apology, and
admire the quick response:

Letter to the CML Community from
Dr. Brian Druker

"Words can provide hope and
inspire people to action. They can also evoke powerful emotions. In launching a
campaign to raise funds for cancer research, we saw a message of hope and a
rallying cry to spark engagement from people. Some in the CML community—a
community we consider of vital importance to our efforts—disagreed.

We've heard from CML patients who
feel the word ‘cure’ used in the campaign takes focus off the challenges they
face. Some have side effects from therapy, concerns about their medical bills
or fears of what will happen if the treatment stops working. Some even feel
marginalized by those with other cancers who express that they should feel
“lucky.” And there is worry that we may imply that no more progress is needed
in treating CML.

We understand, and apologize.
We’re making significant changes to our campaign. We encourage your
constituents to revisit our website to see the changes we’ve made there. We’re
focusing our message on those concepts that are more universally accepted: that
we have revolutionized the treatment of CML with Gleevec® and turned a deadly
cancer into one where life expectancy mirrors that of the general population.

In making this decision, I share
the following thoughts.

I see patients every week in
clinic who alert me to side effects they are experiencing. Many of these side
effects can be addressed. For the majority of CML patients, with good medical
management, individuals can not only survive, but have a good quality of life.
I was concerned by the number of posts I saw that seemed to indicate otherwise.
I urge patients to please talk to their medical providers about side-effects
and other concerns so they can help. I also want to assure the community that
my lab continues to work on CML in an effort to find better therapies and
ultimately a way for all patients to safely stop treatment.

I also encourage people to
recognize that there are many different perspectives. Every person’s cancer
journey is different. We need to embrace these perspectives. Those who feel
cure is the right word for their experience should be as respectfully treated
as those who do not.

We want to be transparent that we
plan on retaining our website and tagline, onedown.org. This idea is core to
our goal of funding research. With Gleevec, we’ve created a life-saving
treatment, and we want to discover more Gleevecs for more cancers. We want to
move the conversation from cancer awareness to making cancer the victim. To do
this, we must let people know that there has been a significant victory in that
battle, regardless of the word one uses to describe it. We hope this is a
position everyone can support.

Thursday, May 8, 2014

Such wonderful news! We must be
off to see the wizard, the wonderful wizard of OZ! The breaking news that CML
is “Cured” can be likened to the wizard, in the “Wizard of Oz.” After traveling
many miles down the yellow brick road, through many trials and tribulations,
Dorothy finally arrives in Oz; and what does she discover? She discovers that
the “Great and Powerful OZ” is nothing more than a broken down old man, hiding
behind a huge façade.

For those of us living with CML,
the word “cure” (restoring one to good health) would mean that our cancer was
eradicated; we would be able to live our life, without a daily dose of medication. It would mean that we would not
have to endure the continual and often debilitating side effects that are a
part of our everyday life and it would mean that we would no longer have to
have our chronic cancer monitored,
every three months. Yes, every three months we go through a two to three week “waiting
period,” wondering whether our miracle drug is still working; or not.

How would you like to be checked
every three months to see whether your cancer is being held at bay, or if it is
once again taking over your bloodstream? Fact of the matter is that these drugs
have only been treating CML for the past fifteen, or so years; we do not even know
how long they will continue to work or what other damage they may be doing, to
the rest of our body.

The word chronic means constant;
habitual; continuing a long time or recurring frequently; and having long
duration: nowhere in this word, do I see an opening for the word cured; I
wonder if a cure is ever really found,
that they would have to rename CML; because if we were ever “cured,” the
diagnosis of chronic myelogenous
leukemia, would no longer fit the bill.

In my opinion, any time someone is
undergoing continual treatment to manage their disease, be it cancer, diabetes,
asthma, Parkinson’s or others, they are undergoing treatment, living with, not
cured of their ailment.

I find the statement to be
insensitive and misleading and it concerns the heck out of me; if we are
already being considered “cured” is this the end of our road? Is the hope of a “real”
cure no longer on our horizon? Must we continue to limp through life, often in
so much pain that we cannot function normally, with the dark CML cloud floating
above our head, waiting for it to unleash the storm?

Must we accept the fact that this
is all that there is and give up the hope that we may someday be able to say, “I
am a survivor! I beat CML, I am CURED!” AND “I no longer am in treatment; I got
to ring the bell!” I want to ring the bell; I want to put a lid on it! I want
to be cured, I want to be done and I don’t want to be angry at those that
really are trying, to make a difference.

I believe that OHSU Knight Cancer
Institute means well but needs to change their campaign. I suppose that in some
weird way, that even negative attention, if it raises money for cancer
research, is better than no attention at all.

I am having a difficult time
wrapping my head around this whole idea and campaign, and my mind is flying in
so many different directions that I am certain that you will hear more from
me, on this subject.

Until then, try and remember that
the yellow brick road really is a journey; a journey that is fueled by hope; something that all of us living with CML have; we have HOPE!

Tuesday, May 6, 2014

As many of you know I live in Boise,
Idaho and my oncologist practices medicine in UCLA. (Los Angeles, Ca.) I am one
of many, who actually travel a long distance to consult with a CML specialist.
I see him four times a year and so far, this has been sufficient.

The unfortunate thing about having
an oncologist far away, is that by the time my PCR results are available, I am
typically back in Idaho; most of the time this has not been an issue, as my PCR
results have been “good,” but my latest test showed a remarkable increase in
the Bcr-Abl gene. Our greatest concern is that the PCR continues to rise,
despite my increased dose of Sprycel.

Since I am not scheduled to see my
oncologist again until August, he is sending an order for a PCR test to be
drawn, a month after being on the increased dose, to a local blood draw center;
my blood will then be sent to the lab in California, to be tested. Once the
results are read, we will determine our plan of action. Hopefully I will be
back on track and there will be no further need for concern.

While it would be ideal to have an
oncologist right down the road in Boise, I feel that the expertise of a CML
specialist is in my best interest, so I will continue to travel to see him.
Luckily with all of the medical advances, not to mention the advances in
transporting blood, I am able to have my blood drawn here, and tested there. I
am also blessed to have my oncologist available, by email, whenever I have
questions or concerns.

I lieu of my recent test results, I
have considered consulting with a local hematological oncologist to see whether
or not he would be willing to work alongside my primary oncologist, in order to
have someone close by, in case of an emergency; I know many who have gone this
route and it seems to work out well. I fee l that it is advantageous to have
someone close in distance, but it is also advantageous to have a CML specialist
on your side, too.

I think my next post will be the
Pros and Cons of choosing an oncologist!

Monday, May 5, 2014

Some days my mind is just blank;
it cannot think, it cannot process, today is one of those days. Since I have no
immediate obligations that I must attend to, I think that I will spend the day
bouncing from one task to another.

What I will do however is make a
list of my “favorite things” since I am unable to get the song, “When the dog
bites, when the bee stings, when I'm feeling sad….” Out of my head!

20 of
My Favorite Things

1.My Family

2.My Friends

3.Dancing

4.Flowers

5.Gardening

6.Baking/Cooking

7.Reading

8.Traveling

9.Snorkeling

10.Singing (in the privacy of my home or
car)

11.Sunrises and Sunsets

12.Thunderstorms

13.Home Decorating

14.Knitting

15.Sewing

16.Painting

17.Writing

18.Campfires

19.Puzzles

20.Games

Wow, I feel better already; I think I will hit the treadmill
for my obligatory twenty minute walk and work on the great room makeover!

Sunday, May 4, 2014

Compartmentalization is a tool,
which we often use as a coping strategy or defense mechanism. It helps us sort
our life into manageable categories, enabling us to deal with each and every
one. I believe that we all do this, sometimes consciously other times subconsciously.
We go through our daily lives dealing with the task that is in front of us; the
one that requires attention; right now. Everyday tasks happen effortlessly,
other tasks, such as cleaning out the garage, or planting the garden must be
put into the mix of “What do I wish to accomplish?” so that their turn will
eventually find its’ way to the top of the list. You will open that compartment
and deal with the contents.

Cancer has its’ very own compartment
that once opened, is filled with many additional compartments. Some of the
compartments that fill the cancer box are fear, treatment, side effects, complications,
triumphs, fatigue, pain, insurance, oncologists, money, time, change in appearance,
change in lifestyle, the stigma of cancer, guilt, worry, frustration, anger,
joy, gratuity, life and death. As a person living with cancer knows, you cannot
possibly visit all of these compartments at the same time, or you would just likely
jump off of a bridge; you must take each and every one of them separately, and
deal with each and every one that arises, when the time comes.

Many people that are diagnosed
with cancer eventually are cured; they are fortunate to be able to close many
of the cancer compartments and only revisit them on occasion. They become part
of their past, something that will always be there, and will have changed their
lives dramatically, but they will no longer have to open those compartments on
a daily basis.

Chronic Myelogenous Leukemia has
yet to reach the status of cured. CML is a blood cancer that is chronic;
chronic meaning that many, many sufferers will have to visit many of the cancer
compartments, on a daily basis; and this sucks! My over-exuberant, positively
optimistic outlook on life lives on, but sometimes I get so sick and tired of
the speed bumps and compartments!

Having CML is not something that I
dwell on, but it is something that I am reminded of every single day. I am
reminded every time I stand up; how I am reminded when I stand up is by pain. How
I compartmentalize it is I know that as I start moving, I will adjust to the
pain, and I can put a lid on it.

I am reminded daily by fatigue;
have a cup of coffee and put a lid on it! I am reminded when I look into a
mirror; I am pale and look like someone I do not know; avoid mirrors and put a
lid on it! I am reminded by doctors’ bills and insurance; deal with one a day
and put a lid on it. I am reminded by a poor test result; reschedule and put a
lid on it. The list goes on and on and on; if I were to dwell on the big
picture and consider that this is the way it is going to be for the rest of my
life, or until a cure is found, I would probably go cray-cray.

Instead, I choose to compartmentalize
the cancer; I make a conscious choice to deal with only the things that need
attention; I try to keep a lid on the rest. I know that this can lead to a
false sense of security, and I also know that I should not keep the lid on so
tightly that I miss warning signs that should be addressed, but I also know
that in order to live my best life, I must only deal with things that are
imperative; and compartmentalize the rest.

That being said, here are a few
suggestions that may help others, that are living with a chronic cancer, or
other condition.

Guide to Compartmentalization

1.Compartmentalize: Isolate your
challenges.

2.Focus on one challenge at a time.

3.Make some progress on each compartment, before moving on to another.

4.Once you have made some progress, you
may then open another compartment.

5.Close the compartments that you
managed.

6.Do not allow an unworthy concern to
fill a compartment.

Compartmentalization is a coping mechanism
that may help you adjust to your new life. Living with cancer is a challenge
for us, and for those around us. The challenge often changes on a daily basis,
so being as prepared as we can, will hopefully help us all, to live our best
life.

Saturday, May 3, 2014

I am beginning to realize that no
matter how many birthdays that we have celebrated; our inner being remains the
same. Our paths may change but the core of who we are does not. As we age, I
believe that our convictions become stronger, and our desire to fulfill our
journey may strengthen, but deep down inside, we still have the same hopes and
dreams, fears and desires. We still have a strong will to live our life, and often,
the only thing standing in our way, is the one thing that invariably DOES change; our bodies!

Those daggone things that carry
around our very beings, while fulfilling our lives, begin to wear down! They
get old and tired and sometimes diseased. We abuse them and often push them to
the brink, and wonder why they look and feel so old! Sometimes we do pamper and protect them, feed
them well and allow them the rest they need, but more often than not, we abuse
them.

So, I am going to start being a
better keeper of my body; I am not entirely sure where or how to start, because
I currently DO eat well, am extremely mindful of any overindulgence, and try to
exercise, when able. I have found that living with a chronic cancer makes all
of the things that my mind “wants” to do much more difficult.

I need to find a way to accept my
limitations while still being able to live my “best” life; this is a great challenge.
I always have hopes of grandeur, and maybe that is one of my problems, maybe I
need to really accept the limitations and set new goals. Dancing is probably
the most difficult arena in which to accept my limitations; in my head, I am
able to dance as well as, and for as long as I used to. The fact of the matter
is; that simply is no longer the case. I need to accept the fact that “The Old
Gray Mare, She Ain’t What She Used To Be!” and move on!

So, maybe if I put this down in
writing, I will actually stick to my guns! I am going to make small goals, ones
that I CAN fulfill, ones that are not so overwhelming that I cannot imagine
accomplishing them on a daily basis; so here goes:

1.I will walk, continuously, a minimum of 20 minutes
per day.

2.I will only eat three peppermint patties a day!

How is that for a start? I will
continue to search for other ways that I can improve my overall health and will
keep you posted.

But for now, I want to say that I
have had a fabulous 55 years on this planet; I, like everyone have experienced
the highest of highs and lowest of lows and feel extremely blessed to still be alive.
Thus far I would say that “I have had a great life” and am looking forward to
what the future holds.

I want to thank all of you that
sent special birthday wishes and let you know that each one of them touched a
special place in my heart. Birthdays are a blessing and each and every one
should be celebrated!

Thursday, May 1, 2014

It is funny how quickly one can
forget unpleasantness. It has only been three days since I began taking an
increased amount of Sprycel. I went from 70 mg a day to 100 mg a day. I was on
100 mg a day for the better part of my three year CML journey, but have been on
a reduced dose for the past six months. Apparently my CML took the decrease and
ran with it; my PCR took a leap. I have increased the Sprycel and will be rechecking
my PCR in two months. Wouldn't it be so cool if there was a lab error?

Anyway, I finally realized that my
weepiness and wanting to crawl into a corner and cry, is not the result of the
bad news; it is the result of the increased Sprycel. I forgot that Sprycel make me sad! Not really sad in a boo-hoo, feeling sorry for myself kind of way, but
sad in a still seeing the flowers, but through a gray cloud sort of way.

Sprycel has a way of dampening my
spirits and masking my true, joyful self. I know that this may seem strange,
but it is real and now that I have remembered this feeling, I can stop
wondering “what is wrong with me!?”

So, on that note, I am changing my
Theme Song back to: “You Can’t Always Get What You Wa--ant!”, cause right now I
guess I am “Getting what I need!”

Leukemia Survivor (CML); I Am Dancing My Way Through

- See more at: http://info.wegohealth.com/thank-you-joining-health-activist-speakers#sthash.S1wMKrx4.dpuf

DISCLAIMER

All information is based on my own personal experience and is for informational purposes only. I am not a medical doctor or medical professional. I am not giving advice, I am merely sharing my treatments and experiences.

I may generate ad income and/or accept advertising ads or links on my blog; at my discretion.

COPYRIGHT NOTICE

All material within "CML Leukemia" blog are the sole intellectual property of the author. Any use or reproduction of these materials is strictly prohibited without the expressed written consent of the author.